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Podcast, Rheumer Has It

Rheumer Has It: Episode 6 –  Separating Myth from Reality for Nutrition and Rheumatic Disease

2 months ago
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Summary:

On this episode of ‘Rheumer Has It,’ hosts Eileen and Cheryl tackle the crucial, yet often confusing, topic of nutrition for people living with rheumatic diseases like rheumatoid arthritis. Drawing from personal experiences and expert insights, they dispel common myths such as the notion that diet alone can treat RA, and also highlight the evidence for some nutrition approaches like the Mediterranean diet as a reliable starting point. 

The episode underscores the importance of integrating diet and other lifestyle approaches alongside medications for optimal well-being. Whether you’re newly diagnosed or navigating your journey, this episode offers clarity on an often confusing topic.

Episode at a glance:

  • Myth #1: Diet is all you need to treat / cure RA
  • Myth #2: Dietary interventions are more effective and safe than medications
  • Myth #3: It’s an either or – -you have to do diet OR medications

Medical disclaimer: 

All content found on Arthritis Life public channels (including Rheumer Has It) was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Eileen Davidson Bio

Eileen Davidson, also known as Chronic Eileen, is a disability and chronic illness advocate from Vancouver BC Canada. Living with a diagnosis of rheumatoid arthritis, she spends a large focus on volunteering and creating awareness around arthritis. With The International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) Eileen is the Educational Media Assistant. Along with AiArthritis, Eileen is a member of the Arthritis Research Canada patient advisory board, and author with over 100 published articles.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

[00:00:05] Eileen Davidson: Welcome to Rheumer has it, the podcast that busts myths, highlights, evidence, and inspires hope for living better with rheumatic disease .

[00:00:13] Cheryl Crow: Through plain language, interviews with experts and our own personal experiences, we offer actionable knowledge so you can thrive today.

[00:00:20] Eileen Davidson: My name is Eileen .

[00:00:22] Cheryl Crow: And my name is Cheryl.

[00:00:24] Eileen Davidson: Join us as we bust myths,

[00:00:26] Cheryl Crow: and spotlight evidence.

[00:00:29] Eileen Davidson: Right, so today we’re gonna talk about probably one of the hottest topics in our community when it comes to people living with rheumatic diseases, not just RA. And that is nutrition or diet or the food that we eat.

I don’t really like the word diet because it sounds restricting. So I talk, I think about nutrition. When I think about what I’m gonna be putting into my body and that has kind of changed my perspective. Before, when I was newly diagnosed with rheumatoid arthritis, obviously I did look into diet like many other people did, and the people around me were going on about, oh, you just need to change your diet.

You just need to lose 10 pounds. Go keto, do carnivore. The A IP protocol, all these things, and it was just so confusing and overwhelming, and you can really go down on some very scary rabbit holes.

I remember being at that time I was a, a young mom. My son was two years old and I was placed on long-term disability, so it was really difficult for me to afford a lot of the things that people were recommending.

And I just remember one day I just broke down in my kitchen because I felt so bad, like the food that I could afford for my son and I was bad and I didn’t know how to, find the proper information of what I should be eating.

So yeah, nutrition’s a very difficult topic when it comes to rheumatic diseases because there’s so many factors that go into our lives about what we can eat, what we can’t eat, what we could afford to eat, and many different things like that.

Cheryl, share a bit of your personal experience with diet.

[00:02:10] Cheryl Crow: Yeah. Thank you for sharing yours, first of all. It’s really, I, I, I resonate with you saying that, you know, of all the lifestyle or non-pharmaceutical interventions, I think nutrition and eating are the most overwhelming, I think for me, both emotionally and cognitively. Because the research is really variable versus let’s say the research on exercise. You know, with exercise you can really reliably see that stretching, strength training, cardiovascular exercise, balance training, those all across the board are positive, right? Whereas with diet, it’s like, this huge variability.

I also think it may, my personal life, what was, what was a little bit hard for me was I was diagnosed this the year before my diagnosis of rheumatoid arthritis. I was diagnosed with a GI disorder called gastroparesis, which is actually really a dysautonomia, a disorder of the autonomic nervous system that is observed in the stomach.

So it’s where these little contractions, when you swallow food, that move the food through your whole digestive tract all the way down to when you defecate, they’re moving very slowly for me. Because of that and my history of recurrent SIBO or sibo, like small intestine bacteria overgrowth, I also, I have to follow a eating pattern where I avoid certain foods that trigger my gastroparesis, some of those quote unquote healthy foods that are often recommended for RA really trigger my bloating and GI distress and slow motility, including like beans, legumes, dig undigestible, or what’s it called, insoluble fiber. So there, that’s been complicated and I have found it helpful to work with a registered dietician.

The other thing I’ll say is a support group leader and somebody who just cares a lot about misinformation in the autoimmune community. I found that a lot of people get really emotionally invested in a certain eating pattern, and it, they can also lead towards something called orthorexia, which is like an unhealthy obsession with only eating healthy or clean or quote unquote good foods.

So, I think it’s so important to kind of, delve into into what you’re gonna delve into next, which is what are reputable sources of information about nutrition versus like some random influencer online.

So Eileen, I’ll let you speak about that.

[00:04:21] Eileen Davidson: Yeah, so when I was thrown into the whole world of nutrition and autoimmune disease, I was gung-ho to try anything and everything at the beginning, and I could see that there was some things that I was changing that were , causing differences in how I was feeling.

I was maybe either sleeping better or I was having, less brain fog, less pain and more energy less bloating. But then there was also some things that I ate that would really aggravate how I was feeling, like worse off. Especially also if it was with like medications in particular. So some days when I have my infusion, I tend to have more stomach pain.

So if I eat something that’s gonna. Increase my stomach pain or making me go to the bathroom, that’s gonna be a problem. So, when I was first diagnosed, I really wanted to find something that was gonna give me proper, information on how to eat healthy, but also make it easier so that I could understand it too and how I could actually apply it to my life or make substitutions for things that I did like to eat that weren’t as healthy.

So I found that going to websites like the Arthritis Society, arthritis Foundation versus arthritis. Places that have people who are trained in arthritis care, registered dieticians, even immunologists, all sorts of people that study our our diseases. There is information on those sites that made sense.

And so I started to stop kind of doing big dives into finding anything I could, especially going into Facebook groups and you hear all these people that they’re changed their diet and they’re miraculously better or something.

You have to be very, very skeptical about that. But for me, what was incredibly eye-opening about this research behind nutrition and diet with my diseases, I was actually one of the patient partners on the 2022 American College of Rheumatology integrative guidelines. So they were going through any other treatment option or care provider that we could go to outside of something medical clinical or not clinical pharmaceutical it wasn’t involving our rheumatologist.

So, there was a very extensive review process of the literature out there, the evidence behind it, and the only diet or quote unquote diet, I like to actually refer to it as a food map, was the Mediterranean diet. And when I found that out, I was like, the Mediterranean diet’s great. I love the food in that.

It’s so easy to, I can cook with olive oil, just think about lots of these vegetables. I like fish. So yeah, it was like more of a food map for me and it was, it provided me a lot of clarity on what I should be doing when it comes to diet. And also like when people ask me like, what diet changes do you make that you have noticed that help you?

And it’s simple. Like I just followed Mediterranean food map.

[00:07:30] Cheryl Crow: Yeah. And today we are gonna delve into a couple of the biggest myths versus realities, for diet and or nutrition and rheumatic disease. I often like to just call it nutrition support or, you know, eating patterns, following a helpful eating pattern.

But the other thing I would just add to that is about that the extreme importance of identifying biased versus unbiased sources of information. So, when the Arthritis Foundation or the Arthritis Society, or Harvard Health or the Cleveland Clinic, when they’re providing patient education online, they don’t have a conflict of interest, right?

They’re having a specialist or someone trained in the medical field, curate their information and evaluate it for effectiveness, they’re providing citations. And they are giving you the unbiased information. They’re not having, getting any kickbacks from that information. Versus, and I’m not saying throw the baby out with the bath water with online influencers, obviously both of us use the power of online influencing to provide valid education and support to patients. But there are a lot of people that have very shady practices online, particularly when it comes to supplements and nutrition programs or coaching. Where they, for example, they might have a multi-level marketing scheme where they are actually getting a, they’re posing as just like unbiased medical information, but they’re actually providing information about a technique that is going to result in them getting a lot of money.

And before we go into the myths, I’ll just say that. You know, the, there’s a, there was a research study from the Global Wellness Institute that showed that the wellness industry worldwide is now worth 26% more than it even was pre pandemic. So the wellness market, which is non-pharmaceutical interventions for health, has exploded.

The wellness industry is now worth over $6 trillion, whereas the global pharmaceutical industry is 1.6 trillion. So the wellness industry is about four times bigger even financially than the global pharmaceutical industry. So there’s nothing inherently good or bad about that. The problem becomes when some of these some of these very lucrative wellness ventures are not evidence-based at times. But they’re posing as, oh, everything’s so safe ’cause it’s natural.

So as always, we will provide lots of links for you in the show notes to delve into this further, but i’ll hand it back to Eileen to talk about our first myth about nutrition and diet and rheumatoid arthritis.

[00:09:57] Eileen Davidson: Yeah, so the first myth I’m sure many have heard is diet is all you need to treat or cure RA, and that’s absolutely, unfortunately not the truth.

I’ve left my rheumatoid arthritis go untreated with medication and that was not fun. I’ve seen with my aunt who was diagnosed with RA 40 years before me, before the time of biologics and the medication advancements that we have now really suffer. I never really saw her walk. She had the deformed hands, but now they are actually seeing a lot less of the people in wheelchairs and deformed hands because of the advances in medication.

But it goes beyond medication. For treating rheumatoid arthritis and going back to the A CR 2022 integrative guidelines. Well, they did recommend the Mediterranean diet. They recommended against any formally defined diet other than the Mediterranean, and they also recommended other lifestyle integrative methods like exercise occupational therapy, mind0body practices and then there were some other ones that they were not really keen on either, like chiropractic care, things like that.

So, is it just diet that we need? No, I think it’s a combination of many different aspects. Medic medicines, some supplements. Talk to pharmacists and doctor about that first because there’s also some supplements that you can take that are actually bad when you have a, an autoimmune disease.

Like we don’t want to think, take things that are going to boost our immune system because we already have overactive immune systems. Then sometimes things like grapefruit can contract with medications that you take for anxiety or depression or pain even. Some anxiety meds are used for pain.

And then, yeah, there’s just a number of things that you really have to understand about what is good for you, what’s not good for you. And it’s very much a personal thing because like, I don’t have gastroparesis so I can eat beans, no problem. Right?

[00:12:07] Cheryl Crow: Right. Mm-hmm. Yeah. I think you’ve probably, those listening have heard this numerous times before, but in case you haven’t, there’s no one size fits all, so we have to find a balance between scientific evidence at the population level, which takes large groups of people and applies different interventions and makes conclusions versus your own quote unquote self-evidence from your own life.

And I’ll say, from my own life, you know, and as an occupational therapist and as a support group and education group leader, what’s become clear to me is that the things that move the needle lifestyle wise for one person might, they might have a different equation for another person.

For example, if I had to only do one non-pharmaceutical intervention, for me, I get a big bang from my buck when I do sleep interventions and exercise. So I said one, okay, if I could only do two, I would do those kind of two.

Whereas I do know people genuinely who the non-pharmaceutical intervention that works the most for them is diet and nutrition. My recommendation for people is approaching it from a mindset of like, curiosity versus like a dogmatic, like you must only eat a certain way.

I think a lot of my problem with a lot of the diets that are posed for rheumatoid arthritis, well A is that they are, the claims are out egregiously outsized for the actual scientific evidence. And then secondly, that they’re so dogmatic that you’re trading one source of inflammation for another ’cause. You’re stressing, you’re stressing the patient out with this restrictive, depressing. Diet where they’re just become food fearful and they have all stress and anxiety around food that causes inflammation too, right? Yeah. Stress and anxiety are not helpful.

Also second thing is that nutrition interventions exercise, non-pharmaceutical things can be done absolutely alongside medication. There’s no doubt that there’s no either or, right?

So, the second myth that we were gonna talk about is that dietary interventions are more effective and safe than medications. And the fact is that while we are, you know, we had that episode with Dr. Hazelwood and talked about the fact that yes, there are potential side effects from medications, there’s also a huge effect of the disease if it’s uncontrolled.

So I think a lot of people compare this perfect world idea that if my diet, if I do a dietary intervention that works, then it will be safer than a medication that might have a side effect. The problem is the dietary interventions statistically do not work at the same level evidence wise as medication.

And that is why, for example, it’s considered unethical in the United States to run a clinical trial with an unmedicated control group. Whether that medication to unmedicated control group is doing a diet or not. The medications are so effective that it’s considered unethical to withhold medications.

It’s like saying someone’s house is on fire and you’re withholding water, right from them. But you’re, you cannot do that. That’s not ethical. So point being just in general, we need to understand that yes, you, you’re gonna be combining different things in your life and that you can do diet and nutrition alongside medications, be it, but don’t, don’t consider them as two equally effective options in general at the population level. The data’s just a lot stronger for medication.

So, what would you add to that, Eileen?

[00:15:27] Eileen Davidson: Well, I think a lot of the diets that people are pushing for reducing inflammation, particularly the keto and carnivore diets, are really actually unhealthy in the long term.

Sure, they’re okay in a small amount of time. If you wanna lose some weight. But if you really think about how the rheumatoid arthritis affects not just their joints, it can affect our heart, it can affect our blood pressure, it can affect our brains, our skin, all things like that. So diet is going to have an effect on that.

So if you’re eating nothing but high saturated fat, you’re actually increasing your risk of heart disease, which rheumatoid arthritis has already increased your risk of, so why increase more risk for that, when there’s really no scientific evidence of the benefits for these diets to reduce inflammation or o prolong our health or prevent comorbidities?

Diet’s a very powerful thing. It can help you prevent some things. That is very true. Type two diabetes can sometimes be prevented. Obesity sometimes can be prevented, and I say sometimes because there are times where you cannot prevent it.

For me, diet does make me feel significantly better. If I eat something bad, I’m probably not gonna feel very good, but am I able to 365 times every day for a year healthy, multiple meals a day, snacks? No, it’s, it’s very much impossible.

So it can’t be the one thing that I focus on and. What I can focus on rather than focus on like these diets that have all these evidence to reduce nutrients that we need for energy in particular, like when we cut carbs out, that’s really hard diet to already follow.

And then you’re actually just kind of feeding more into our symptoms by depleting your body of these energy sources. So it’s just generally easier to focus on what you know is good for you and just eating that.

[00:17:40] Cheryl Crow: Yeah, I had listened to a talk by both of our friend Cristina who’s the arthritis dietician, and she made a really helpful, just basic distinction, which is, there’s approach of going towards like adding more things into your diet that are anti-inflammatory or that help reduce inflammation versus cutting out things that are pro-inflammatory, things that can cause more inflammation.

And it’s like you can actually embrace like a adding approach. Say, okay, yeah, I might eat chocolate, I might have a candy bar or something. ’cause they, I enjoy that for my quality of life, but can I add throughout my day also some foods, that have antioxidants like spinach in a smoothie or something like that, or blueberries. And that a lot of times is a more sustainable approach than this like, restriction only approach.

And I realize now we were, we have a third myth, which I already kind of, said it out loud, but I’ll let you go back Eileen and say it too.

[00:18:34] Eileen Davidson: myth number three. It’s an either or. You have to do diet or medications. Absolutely not. I think we, yeah, we’ve kind of gone over this.

We need to do both to prevent comorbidities to help fuel our bodies when we are fatigued, help reduce inflammation. There’s things that we can take control of, well, not complete control of, but we can do for diseases, and that is definitely eating healthy, but also the medications are one thing that we can do that’s gonna help our illnesses.

[00:19:10] Cheryl Crow: Yeah, and I think just in my case, again, an example with having gastroparesis, many people with rheumatoid arthritis have additional conditions, whether those are thyroid conditions, whether it’s migraine, you know, we’re balancing a lot of conditions often. So I think a lot of times when people present these diets in a very simplistic way, like you just have to do the autoimmune protocol or something, it doesn’t take into account often the complexity of your, your situation.

So that’s why, again, there’s like the need to individualize everything for, for the individual.

[00:19:41] Eileen Davidson: Yeah, and I think it also comes down to like, do we like the exact same foods? Right? So mushrooms are great for you. I don’t like them. So it, it’s also eat what you like, eat what you know, it’s gonna be good for you and you don’t have to worry about ing some influencer’s diet.

[00:20:01] Cheryl Crow: Well, I think, I guess I would add a fourth myth, which is that if a diet worked really well for someone else, it will work for you. ‘Cause our bodies are different, you know? And that’s, I see it so often people say, you know, oh, try, I did this diet and it worked for me, and you have the same diagnosis, therefore if you try the diet that I did, it will work for you. And that’s logically just not true, unfortunately, as much as it would be, make life easier if it was.

And and knowing that ahead of time, that okay, me trying a diet that works in my body when I have rheumatoid arthritis, that is proof that that diet worked for me it does not proof that that diet will work for you, so.

[00:20:39] Eileen Davidson: And there’s also, yeah, there’s also a number of factors too. Like one of the interesting things I learned at my first American College of Rheumatology that I pres was at, was that diet is actually incredibly difficult to study because it can be, one patient can have different salt than the other or amount of salt, so it’s very hard to do a controlled study with diet.

So that’s why there isn’t a whole lot on it.

[00:21:08] Cheryl Crow: Yeah, it is very difficult. Well, so it’s time to go to our wrap up and conclusion questions. So we always end the episodes with discussing, you know, what’s the most important takeaway we’d like someone to take from this episode?

I would say the two ones for me would be like there’s no one size fits all for nutrition and rheumatic disease. Although there is, evidence that Mediterranean diet, if you’re gonna start somewhere, that would be the statistically most likely to give you some relief. But I would also add to it that diet and nutrition has to fit into your overall life, lifestyle. So that would be, think about your quality of life when you’re looking at nutrition, I guess I would say. What? What about you, Eileen?

[00:21:48] Eileen Davidson: I definitely agree with the no one size fits all. I just think that people need to take in consideration that it is more than just diet to treat a severe, debilitating rheumatic disease. It’s gonna take even more than just medications. It takes a whole integrative approach. And diet nutrition is obviously a huge one, but it is going to be different per person.

[00:22:19] Cheryl Crow: Yeah, a hundred percent. So, where you already mentioned a few places, but let’s just reiterate, where are some places we recommend people go for more resources on this topic?

[00:22:30] Speaker: I would recommend, of course, checking out the 2022 integrative treatment guidelines and the resources that we collected together for our, it’s not just joint pain session from the 2024 American College of Rheumatology conference that both myself and Cheryl were involved with. Plus Christina Montoya, who is a registered dietician living with rheumatoid arthritis.

There’s also the lupus dietician who’s. Tanya f and Dr. Oun sla, who lives with rheumatoid arthritis and is a pediatric rheumatologist, but also makes incredible content. So there’s definitely some variable reliable resources out there on the internet. It’s just making sure you can spot the reliable ones versus the misinformation.

[00:23:18] Cheryl Crow: Well, and one thing thing I would just add to that is that there is a very big difference between a registered dietician and a nutritionist. So, a registered dietician is somebody who’s gone through usually a master’s. They’re board certified. They’re, they have a level of quality control to them versus literally anyone can call themself a nutritionist.

You can, you could do nothing other than internet research and call yourself a nutritionist. You could do a six week course and call yourself a nutritionist. And so be, be aware that there, that that nutritionist doesn’t necessarily have the same level of training and expertise as, as a registered dietician.

And I, I can’t speak highly enough about getting really individualized one-on-one support from a registered dietician. That helped me a lot, particularly managing, you know, RA along with a gastroparesis. So, mm-hmm. That’s my concluding thought.

[00:24:11] Speaker: I also second the going to see a registered dietician. I found far more information, like practical information from them as well, and they were able to bust a lot of the myths and misinformation that’s around about diet and traumatic diseases.

Well, thank you for joining us today. Stay tuned as we uncover more myths, stigmas, and misconceptions about rheumatic diseases.

[00:24:36] Cheryl Crow: Thanks again and don’t forget to comment or view the video on YouTube, on the Arthritis Life Channel, as well as on social media. Thanks so much. See you next time. Thank you.

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